{"id":18377,"date":"2023-08-11T18:03:54","date_gmt":"2023-08-11T18:03:54","guid":{"rendered":"https:\/\/dupmecp2.eu\/celebrazione-di-un-anno-di-progressi-il-viaggio-e-i-risultati-dellassociazione\/"},"modified":"2023-08-11T19:59:26","modified_gmt":"2023-08-11T19:59:26","slug":"celebracion-de-un-ano-de-progresos-el-viaje-y-los-resultados-de-la-asociacion","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/es\/celebracion-de-un-ano-de-progresos-el-viaje-y-los-resultados-de-la-asociacion\/","title":{"rendered":"Celebrando un a\u00f1o de progreso: recorrido y resultados de la asociaci\u00f3n."},"content":{"rendered":"<p>Hace un a\u00f1o se cre\u00f3 la asociaci\u00f3n \"Lasst uns MDS heilen - DupMECP2\".<\/p>\n\n<p>La historia de la asociaci\u00f3n comenz\u00f3 con el diagn\u00f3stico de Matteo en 2021: tras trece a\u00f1os de incertidumbre y lucha por parte de sus padres, David y Caroline Covini, finalmente se les diagnostic\u00f3 la enfermedad de duplicaci\u00f3n MECP2, que es una enfermedad rara de la que s\u00f3lo hay 260 casos en todo el mundo.<\/p>\n\n<p>Unidos por su amor y el deseo de marcar la diferencia para los ni\u00f1os con SMD, David y Caroline, ambos cient\u00edficos, se embarcaron en un viaje extraordinario. Este viaje desemboc\u00f3 en la creaci\u00f3n de \"Lasst uns MDS heilen\", una organizaci\u00f3n dedicada a acelerar la investigaci\u00f3n, proporcionar apoyo y promover la unidad entre las familias que se enfrentan a este reto.<\/p>\n\n<p>En mayo de 2022, mientras pon\u00edan de relieve la lucha de los padres contra las enfermedades raras y sensibilizaban a los medios de comunicaci\u00f3n sobre los SMD, los Covini asociaron a las familias Molnar y Curic, directamente afectadas por el s\u00edndrome de duplicaci\u00f3n MECP2. Con el firme deseo de contribuir a los esfuerzos de sus hijos, estas dos familias unieron sus fuerzas al comit\u00e9 ejecutivo de la asociaci\u00f3n, formando un equipo formidable y dedicado.<\/p>\n\n<p>Esta fecha no s\u00f3lo confirma la creaci\u00f3n de la asociaci\u00f3n, sino que tambi\u00e9n celebra los incre\u00edbles esfuerzos realizados en la lucha contra el s\u00edndrome de duplicaci\u00f3n del gen MECP2. En s\u00f3lo un a\u00f1o se han logrado resultados significativos:<\/p>\n\n<ul class=\"wp-block-list\">\n<li><strong>Un equipo fuerte y un apoyo global:<\/strong> El comit\u00e9 ejecutivo de la asociaci\u00f3n, junto con expertos cient\u00edficos, familiares y amigos, ha reunido a m\u00e1s de 130 miembros de m\u00e1s de 10 pa\u00edses. Juntos formamos una red mundial comprometida a cambiar las cosas.<\/li>\n<\/ul>\n\n<div style=\"height:10px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<ul class=\"wp-block-list\">\n<li><strong>Piattaforma informativa multiling\u00fce:<\/strong> La asociaci\u00f3n ha puesto en marcha <a href=\"https:\/\/dupmecp2.eu\/es\">www.dupmecp2.eu<\/a>MECP2, un sitio web que ofrece informaci\u00f3n en varios idiomas sobre el s\u00edndrome de duplicaci\u00f3n MECP2. Esta plataforma act\u00faa como centro de conocimiento y asesoramiento para apoyar a las familias en sus esfuerzos.<\/li>\n<\/ul>\n\n<div style=\"height:10px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<ul class=\"wp-block-list\">\n<li><strong>Eventi e raccolta fondi:<\/strong> El primer acto de recaudaci\u00f3n de fondos en l\u00ednea de la asociaci\u00f3n sensibiliz\u00f3 a la opini\u00f3n p\u00fablica y demostr\u00f3 el poder de la determinaci\u00f3n colectiva. Se han recibido generosas donaciones y actualmente se est\u00e1 planificando un ambicioso proyecto de recaudaci\u00f3n masiva de fondos que deber\u00eda ponerse en marcha en oto\u00f1o.<\/li>\n<\/ul>\n\n<div style=\"height:10px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<p>Hoy, m\u00e1s de un a\u00f1o despu\u00e9s, estamos llenos de emociones y deseamos expresar nuestra inmensa gratitud a todos los que han participado en este viaje. Su apoyo es incre\u00edblemente importante.<\/p>\n\n<p>Cada paso que hemos dado, cada sugerencia que hemos hecho y cada legado que hemos creado han contribuido a nuestra esperanza colectiva de un futuro mejor para nuestros hijos.<\/p>\n\n<p>Riflettendo su ces risultati, il nostro team rimane fedele al suo impegno. Esta es la celebraci\u00f3n de un a\u00f1o, pero tambi\u00e9n es un recordatorio de que a\u00fan queda mucho por hacer. El viaje a\u00fan no ha terminado y todos esperamos con impaciencia lo que vendr\u00e1.<\/p>\n\n<p>Con determinaci\u00f3n, unidad y progreso como gu\u00eda, la asociaci\u00f3n sigue avanzando.<\/p>","protected":false},"excerpt":{"rendered":"<p>Esattamente un anno fa veniva lanciata l&rsquo;associazione \u00ab\u00a0Lasst uns MDS heilen &#8211; DupMECP2\u00a0\u00bb. La storia dell&rsquo;associazione \u00e8 iniziata con la diagnosi di Matteo nel 2021: dopo tre anni di incertezza [&hellip;]<\/p>","protected":false},"author":1,"featured_media":18351,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[137],"tags":[],"class_list":["post-18377","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-notizie"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Celebrazione di un anno di progressi: il viaggio e i risultati dell&#039;associazione. - DupMECP2<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/dupmecp2.eu\/es\/celebracion-de-un-ano-de-progresos-el-viaje-y-los-resultados-de-la-asociacion\/?lang=it\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Celebrazione di un anno di progressi: il viaggio e i risultati dell&#039;associazione. - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"Esattamente un anno fa veniva lanciata l&rsquo;associazione \u00ab\u00a0Lasst uns MDS heilen &#8211; DupMECP2\u00a0\u00bb. La storia dell&rsquo;associazione \u00e8 iniziata con la diagnosi di Matteo nel 2021: dopo tre anni di incertezza [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/dupmecp2.eu\/es\/celebracion-de-un-ano-de-progresos-el-viaje-y-los-resultados-de-la-asociacion\/?lang=it\" \/>\n<meta property=\"og:site_name\" content=\"DupMECP2\" \/>\n<meta property=\"article:published_time\" content=\"2023-08-11T18:03:54+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2023-08-11T19:59:26+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2023\/08\/DupMECP2_one-year-anniversary.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1163\" \/>\n\t<meta property=\"og:image:height\" content=\"1707\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Caroline\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Escrito por\" \/>\n\t<meta name=\"twitter:data1\" content=\"Caroline\" \/>\n\t<meta name=\"twitter:label2\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/dupmecp2.eu\/celebrazione-di-un-anno-di-progressi-il-viaggio-e-i-risultati-dellassociazione\/?lang=it#article\",\"isPartOf\":{\"@id\":\"https:\/\/dupmecp2.eu\/celebrazione-di-un-anno-di-progressi-il-viaggio-e-i-risultati-dellassociazione\/?lang=it\"},\"author\":{\"name\":\"Caroline\",\"@id\":\"https:\/\/dupmecp2.eu\/#\/schema\/person\/b41e8cbba153cd974ee340386af279ee\"},\"headline\":\"Celebrazione di un anno di progressi: il viaggio e i risultati dell&rsquo;associazione.\",\"datePublished\":\"2023-08-11T18:03:54+00:00\",\"dateModified\":\"2023-08-11T19:59:26+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/dupmecp2.eu\/celebrazione-di-un-anno-di-progressi-il-viaggio-e-i-risultati-dellassociazione\/?lang=it\"},\"wordCount\":460,\"publisher\":{\"@id\":\"https:\/\/dupmecp2.eu\/#organization\"},\"image\":{\"@id\":\"https:\/\/dupmecp2.eu\/celebrazione-di-un-anno-di-progressi-il-viaggio-e-i-risultati-dellassociazione\/?lang=it#primaryimage\"},\"thumbnailUrl\":\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2023\/08\/DupMECP2_one-year-anniversary.jpg\",\"articleSection\":[\"Notizie\"],\"inLanguage\":\"es\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/dupmecp2.eu\/celebrazione-di-un-anno-di-progressi-il-viaggio-e-i-risultati-dellassociazione\/?lang=it\",\"url\":\"https:\/\/dupmecp2.eu\/celebrazione-di-un-anno-di-progressi-il-viaggio-e-i-risultati-dellassociazione\/?lang=it\",\"name\":\"Celebrazione di un anno di progressi: il viaggio e i risultati dell'associazione. - 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